Study shows disadvantages of medical crowdfunding

(Reuters Health) – While crowdfunding platforms can fill insurance gaps, help patients pay for essential care and avoid medical debts, they are also used to raise large sums of money for treatment inefficient and experimental, according to a new study.

Researchers have found many fundraising campaigns to pay for unproven therapies, according to the study published in JAMA.

"Large sums of money are collected for dangerous, marginal or seemingly ineffective interventions, without any responsibility on the part of fundraisers or providers of procedures that are often extremely expensive, useless or even harmful," said the co-author. Art Caplan, medical ethicist at the NYU School of Medicine in New York.

To examine the issue more closely, Caplan and colleagues focused on the largest crowdfunding site, GoFundMe, and three other well trafficked sites for medical fundraising: YouCaring, CrowdRise, and FundRazr. They focused on five scientifically unsupported, experimental or potentially dangerous treatments: homeopathy or naturopathy for cancer; hyperbaric oxygen therapy for brain damage; stem cell therapy for brain and spinal cord injury; and long-term antibiotic therapy for chronic Lyme disease.

The researchers identified all existing fundraising campaigns published from November 1, 2015 to December 11, 2017 using search terms related to interest therapies. Out of 1,636 campaigns identified by the researchers, 1,059 indicated their intention to use the funds raised for one of the five treatments. These campaigns were looking for a total of over $ 27 million. The vast majority – 98% of the campaigns – were on GoFundMe.

A total of $ 6.8 million, about 25 percent of what was requested, was raised through these crowdfunding campaigns. The largest proportion, nearly $ 3.5 million, was raised in 474 fundraising campaigns for the treatment of homeopathic or naturopathic cancer.

The 190 campaigns to raise funds for hyperbaric oxygen therapy for brain damage brought in nearly $ 785,500 out of the $ 4 million requested.

The stem cell brain injury campaigns, which raised nearly $ 6 million, raised $ 1.25 million, and stem cell therapy campaigns combined with $ 2.6 million dollars, raised $ 590,446. Campaigns to raise funds for long-term antibiotic therapy for chronic Lyme disease required about $ 2.16 million and about $ 690,000.

The dangers of such campaigns, says Caplan, lie in the lack of regulation.

"Generous donors are scammed and desperate families and patients are being exploited by charlatans, charlatans and dubious providers," he said. "Crowdsourcing sites in the health sector should insist on standard campaigns that indicate where the money goes, what if all the money is not collected, what is the return policy and that something must be displayed on the result of the intervention, if any. "

While the study opens the discussion on an important topic, it complicates the issue by combining clearly untested treatments – such as homeopathy to treat cancer – with treatments tested in clinical trials, such as therapy. by stem cells for spinal cord injury and hyperbaric oxygen. Lisa Parker, director of the Center for Bioethics and Health Law at the University of Pittsburgh, said Lisa Parker.

Nevertheless, crowdfunding has two obvious disadvantages for these treatments, Parker said. First, patients can harm their health if they use crowdfunding to pay for treatments that have been proven effective and for which they give up proven treatments. Second, if they use participatory funds to fund experimental treatments outside of clinical trials, this would deprive the company of the information it would have if the patient were in clinical trials.

The results did not surprise Dr. Jeffrey Kahn, director of the Johns Hopkins Berman Institute of Bioethics. "This is the predictable consequence of people's ability to address the public without intermediaries, reliable or not," said Kahn. "It's a way to get around these intermediaries, whether they're doctors or insurance companies, to get what they want to achieve."

But intermediaries "serve a purpose," said Kahn. "In this case, it prevents people from spending their money on activities that do not work or that could be harmful to them. This is not a new problem. Do you remember laetrile and people going to Mexico to cure cancer? It was an apricot kernel extract that proved to be not only useless, but also harmful. "

SOURCE: bit.ly/2PQEVqB JAMA, online 23 October 2018.